Bent, Not Broken: My Scoliosis Journey

June is Scoliosis Awareness Month — a time to shed light on what scoliosis really means, and to share the stories of those who live with it every day. For me, it’s also a time to reflect on how scoliosis shaped my life, my family’s passion for movement, and even the birth of our business, Pilates Reformers Australia.

I’m sharing my story here to raise awareness, but also to connect with anyone else who’s navigating this journey. Scoliosis isn’t just about a curve in your spine — it’s about the relationship you build with your body, the setbacks and victories, and the small, quiet ways you learn to keep moving forward.

What is Scoliosis?

Scoliosis is when the spine curves sideways in an S or C shape, diagnosed when the curve is more than 10 degrees. It’s a musculoskeletal condition affecting around 2–3% of people worldwide. The more severe curves are more commonly found in females during adolescence, but for me, it started before I could even walk.

Born With It – My Early Medical Journey

I was born with a congenital diaphragmatic hernia (CDH), a rare condition where there’s a hole in the diaphragm and organs from the abdomen push into the chest, crowding the lungs. I had emergency surgery as soon as I was born to fix the CDH but that was only the beginning.

Because of CDH, I developed scoliosis. My spine was never going to be straight, and hospitals quickly became a second home. I don’t remember a time when my body didn’t feel “different” — scoliosis wasn’t something I got, it was something I grew up with.

Braces, Therapy & The Long Road

From the age of six, I wore a Spinecor brace; a flexible brace that

tried to guide my growing spine into a better alignment. From age eight to thirteen I moved on to a Boston brace, a hard plastic

 shell that wrapped around my torso.

(Image: Boston Brace)

(Image: Spinecor Brace)

Wearing a brace as a child was more than just physically uncomfortable — it made me feel like an outsider. I hid it under my clothes and tried to pretend it wasn’t there, but it was always with me. My family and I tried everything to help manage my scoliosis: physical therapy, chiropractors, massage therapists. Some things helped, some didn’t, and each time something didn’t work, it was both frustrating and defeating.

The Surgery – Spinal Fusion

In January 2016 I was booked in for Spinal Fusion Surgery at Westmead Children's Hospital. At only 14 years old, the decision to have surgery was one of the biggest I’ve ever faced. I was afraid; afraid of how it would feel, how it would change me, and if I’d still be able to do the things I loved. The thought of surgery felt like the worst-case scenario, but with my curve at around 97 degrees, it wasn’t really a choice — it was something I had to do.

The surgery itself was long, about 10 hours, and afterward I spent a day or two in the ICU. The staff at Westmead Children’s Hospital were incredible. They explained everything clearly, checked in on me often, and made me feel as comfortable and safe as possible. After a couple of days, I moved to the Orthopaedic Ward for about a week before heading home to continue my recovery.

At home, my parents rented a hospital bed for me so I could rest more easily. Eventually, I moved back into my own bed and went back to school around six weeks after surgery. I was still healing, but I was grateful to be back into something that felt normal.

Recovery was challenging — physically and emotionally. It took patience and small milestones: getting out of bed alone, taking a deep breath without pain, feeling my body stand a little taller. In hindsight, I'd built the surgery up in my mind to be so much worse than it turned out to be. The results were life-changing: I hardly ever get the migraines I used to have, and I even grew a few inches taller because my spine was finally straighter.

How Scoliosis Sparked a Family Passion

It was through my journey with scoliosis that we discovered the power of Pilates. We saw firsthand how it could help strengthen and realign the body, not just for me, but for so many others who were struggling with their own physical challenges. That discovery eventually inspired my family to start Pilates Reformers Australia, a business built on the belief that movement has the power to heal, strengthen, and transform lives.

Nearly 10 Years Later – Life After Fusion

Today, nearly a decade after my spinal fusion, I still live with reminders of my scoliosis journey — occasional stiffness, tightness in my upper back, neck, and shoulders. But I also live with a sense of gratitude. My scoliosis is still very much a part of who I am and what makes me, me. The pain I do feel isn’t debilitating, and I’m fortunate that it doesn’t hold me back from living my life like any other 24-year-old.

I still do Pilates to keep me strong and mobile, though not as regularly as I probably should — I’m just as guilty as anyone else of choosing Netflix over mindful movement. But when I do make the effort, it always reminds me of how important movement is in my journey. My body might be fused in places, but I’m still moving, still growing, and still finding new ways to redefine what strength and resilience look like for me.

Words of Advice – For Anyone Listening

For any young person recently diagnosed with scoliosis: know that you are stronger than you think. Your journey doesn’t have to look like anyone else’s, and it’s okay to feel scared or wonder “why me.” But your difference is what makes you special — and your journey will give you a perspective and strength that can’t be learned any other way.

For parents: be gentle and patient. You don’t have to fix everything — sometimes just being there and asking questions is enough.

And for anyone who’s never experienced scoliosis: remember that while it may be invisible to you, it’s always present for us. Your empathy means the world, but let us decide how much we want to share.

If you have a scoliosis story of your own, I’d love to hear it. Let’s keep the conversation going — because the more we share, the more we understand, and the stronger we become together.

About The Author:

Kirsten Burgess works in operations and marketing at Pilates Reformers Australia, a family-run business dedicated to supporting people’s Pilates journeys. Outside of work, you’ll often find her enjoying brunch, catching up on Netflix, or sharing a glass of wine with friends and family.